For my son's night-shift nurse who changed my life without saying a word. I am paying it forward, and I thank you.

Tuesday, December 8, 2009

Feeding update

So most of Alex's feeds lately have felt like a burden. Why? He WONT feed himself, so we do the spoon work, we put the bites into his mouth, its like being stuck at a 10 month old feeding level ALL THE TIME. Then add a baby to the mix, and Alex's feeds seem rushed, and the therapy part of it all has been neglected.Max has started to become more easy going, as he has no choice. So it doesn't feel like I have to hurry up, and get Alex's feeds over to meet whatever needs Max may have anymore. Although most of Alex's feeds my left foot is bouncing this bundle of cuteness in his favorite place, the bouncy seat.No, he doesn't like his swing. One of our problems also is that we get into feeding habits, we get used to what we are doing, and we forget to move forward to the next step in teaching Alex to be tube free. Right now he is eating a ton of pureed food such as meatloaf, meatballs, stews, and lots of left over turkey! then there is the textured food like bananas, potatoes, and nutrigrain bars.He hasn't been drinking anything by mouth because it was hard to get him to, and honestly we just weren't in the habit of working on this. I'm confident this is the only down fall of the feeding tube. We parents get used to it, it becomes routine, and frankly it is easier to get your child to drink all their milk when they don't have to drink it!

However this morning I put some of his vanilla flavored peptamin jr into a medicine cup, and gave him a drink. He took about 10cc in one swallow, so I filled it up again, this time half an ounce (15cc), he drank it, again (15cc), and again (15cc), and a little more. In the end the boy drank TWO OUNCES of his feed. HALF OF HIS FEED! He hasn't done this since he was a newborn, before he went NPO (no food by mouth).

11 comments:

Oh, Jessica, I am so excited for you and for Alex. What a huge step for the precious little guy. This is such good news. Soon that feeding tube will be out and Alex will be on his way to doing things on his own. He gave you a great Christmas gift today.

wow that sounds great feeding is such a struggle I'm in the samr boat only my baby 7 months is on solids so I'm feeding one then the other. Ashley my daugher with the tube will feed herself some but not enough. Drinking is a hugh challenge here too I feel like I'm neglecting it to...the tube is to easy I agree. I'm right there with you. sounds like Alex making good progress.

Way to go Alex! You are doing great! Don't worry, Jessica, the fact that he's eating so many of his calories is a wonderful sign that he'll be eating and drinking everything soon. Maybe not soon enough, but soon by Alex's time. Does he eat Cheerios or those baby puffs with his fingers? I got Natalie to feed herself with her fingers a lot before I tried to get her to use a spoon. She had a hard time keeping things on her spoon to get them to her mouth anyway, but could definitely get a Cheerio to her mouth with her hand.

You are definetely someone to admire, Jessica! You are such a strong mommy..... I am so thankful that Alex did that for you...... I know how you feel about just doing what you have to do to get by, while the therapy of it all has to get lost somewhere... its tough... you are doing a great job, momma.... God certainly knew Alex needed you as his mommy.

Paying it forward

My new normal

I am a mamma bear to 4 boys. I take each day as it comes even when the worst becomes reality. I was forever changed by my son's night shift nurse in 2007, she changed my life without saying a word. I have turned these mountains into victories by going back to school, and becoming a nurse, and will pay it forward until my journey ends with a little crossfit in between.

-Alex was born with Rubinstein Taybi Syndrome.Pulmonary hypertension at birth.Malrotation of the intestines.Uracheal cystPhase 2 kidney reflux (right side)Angulated thumbsmild near sighted in right eyedysphagiaPDA

-At five years old my son Max was diagnosed with type one diabetes. He depends on insulin, and each day is a job to stay alive, he is my hero.

About Me

In the middle of the night at my lowest moment my sons nurse touched my heart without saying a word. I went to school and I'm paying it forward. #newkindofnormal #RTS #typeonediabetes #nurselife #payitforward #crossfit #momswhocrossfit #nurseswhocrossfit